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Standard of Care

It might surprise you to find out that I'm only on my 5th (of 25) round of radiation. We had some delays.

Before I had a chance to attend my pre-radiation planning appointment, I received a call from my breast surgeon.  He called while I was in Denver, for my brother's wedding. There I was, happily having breakfast with my whole family (and future family), the boys were stealing everyone's attention (and hearts) when my phone rang. I figured it was someone confirming an upcoming appointment, so I was surprised to hear my surgeon on the other end.

He said he had presented my case to the team of Oncologists, and that with my mastectomy pathology report having micro metastasis in 1 (of 4 removed) lymph node, it is "standard of care" to go back in for an additional surgery to remove ALL the surrounding lymph nodes in my left (cancer) side. He said the team came to the consensus that I should proceed with the additional surgery, however, my personal Oncologist and breast surgeon were both fine with me not having the surgery, and simply proceeding with radiation. But, it was still their responsibility to let me know that the Team recommendation, was to have surgery first, then radiation.

So, there I was, trying to be present and enjoy the moments in Denver, while processing this information. I didn't want to have yet another surgery, especially one that may cause more harm than good. I allowed myself one freaked out crying session while sitting on a bench at the Denver Children’s Museum (which is awesome by the way). Then I forced myself not to think about it until our vacation was over. I was like 67% successful in that.

Once I got back to Orlando, I scheduled an appointment with my Oncologist and asked for more information and his opinion. He confirmed that it was standard of care, but that he could NOT offer me any guarantees, having the surgery wouldn't increase my survival statistics and it didn't prevent recurrence by any additional percentages. Having the surgery, however, would come with it's complications, mainly lymphadema and increased limited range of motion. AND if I had the surgery, I still had to go through radiation, so it's not like I was getting out of that. So, my decision was to skip the surgery and proceed with radiation immediately.

Naturally, the guilt is ridiculous. Constantly nagging at me about if I made the right decision. If my cancer comes back, will I kick myself for not doing the surgery? Definitely, but this is the decision I made.

Path(ology) to radiation

Was anyone else expecting my oncologist(s) to declare me “cancer free”? Yeah, me too, but I guess it doesn’t work that way. The pathology report from my surgery showed that Chemo did reduce the size of my tumor by over half and it was removed with clear margins (all cancer cleared from original site and surrounding tissue)! So, why aren't we celebrating yet?

My surgeon also removed 3 lymph nodes, including the sentinel (boss node) and sent them for testing. Well, sad panda, cancer was found in one of them. Not much cancer, but still cancer. Chemo had eliminated a lot of it, but had not killed it entirely. Hard to believe anything can survive chemo, but it's scary as hell to know that some cancer can.

So, basically, the pathology report wasn't great, but at least we know that all the cancer is gone, right?  We got the tumor and the diseased lymph node, so we got the cancer all out, right? I'm cancer free!? This is what I am waiting to hear from the doctors - but the best I could get from the oncologists was "most likely the cancer is out of your body". MOST LIKELY?!

What do I do now? I'm going to do radiation treatment. While I most likely don't have cancer anymore, but just in case any cells went rogue and are swimming around somewhere thinking about cannonballing up my life again, we're gonna zap them.

I had already mentally prepared for this, as we knew the lymph node was still positive before surgery, so I don't really have many feelings about it. Basically, it sucks, but this whole damn thing sucks, so let's just keep going and see this thing through to the end.

I'm nervous, of course, about side effects - both short term and long term. I'm worried about small stuff, like what radiation will do to my skin and how it will impact my reconstruction. How will I handle the logistics of daily treatment with a 2 year old in tow? I'm scared, but like all other aspects of this process, I have to do every possible thing I can to stay here for my family. If there's a chance radiation will kill any remaining cancer cells and lessen my chances of a recurrence, then I have to take it.

I won't be able to get any additional fills to my expanders once radiation begins, so we only have 3 weeks to do 6 weeks worth of skin stretching. I had my first fill this week and it was crazy, I'll have to  do an entire post on the process, because, wow. But, I'll leave you with this - I sat there, while they stuck a needle in my "boobs" and pumped them up, like balloons, with saline. I literally saw them inflate in front of my eyes, it was surreal. They will pump me up a bit more each week until I start radiation. Then we wait and see how my skin reacts.

In the meantime, I'm noticing the lingering effects from the chemo less and less each day. My nails are dead, but they haven’t fallen off and...
See that beautiful soft pink?! There’s new growth! 
And yesterday I noticed I had LOTS of hair under my arms, now if only I could lift my arms up high enough or long enough to shave. I’ll spare you the photo on that on.

So, basically, there's growth happening over here and I'm most likely, cancer free. Let's do some radiation to keep it that way. Suck it cancer.

She's so Flat

I did it. I walked into that hospital because I had to. Once I walked through those doors, the rest was up to my team (I may not ever have the words to express my gratitude for those individuals). My surgeons, doctors, nurses, all of them, made it possible for me to say that I am alive!

The pain has been manageable thanks to strong pharmaceuticals. I stopped taking the opiate meds about 3 days post-op because, omg, they are the worst. Itchiness all over, all the time and it took DAYS to poop, after much abdominal distress! Nope, I'll just rely on Ibuprofen. 

It hasn't been easy though, I actually had to have a followup surgery yesterday (11 days post-op) because of a slight complication. At my first appointment with my plastic surgeon after surgery, they took the bandages off and noticed right away that I had developed some skin necrosis. Don't google it, it's gross, trust me. It's simply dead skin. Some of my skin died because, at some point during the initial surgery, the network of blood vessels that supply blood to the tissue were damaged. Basically, it lost it's connection to the blood supply and died. So, my plastic surgeon had to get me back in the O.R. and remove the dead skin/tissue. 

Other than the pain and discomfort, the worst part of recovery has been the J.P. Drains. Double mastectomy with expander placement, means two drains on each side. They removed one from each side at that first post-op appointment. So, now, I have one on each side. That's better, but I still can't wait to get them out. I'm assuming I'll have them longer since I had to have that second surgery. 

What else, my range of motion with my arms is non existent. I'm trying to T-Rex everything, but that natural instinct is to reach out, don't do it. I reached up and grabbed something and needed to use the opiate pain meds to squash the pain. And for some reason, I keep injuring my left arm in bed. I think I'm using it to push up or move positions, I wake up screaming in pain from arm pain. It's not my chest, that's primarily numb, but my armpits and arm muscles are donezo. 

Boob Voyage

It's the eve of my double mastectomy and I'm having a lot of feelings. Mostly anxiety, but some definite sadness too.

Don't get me wrong, I understand the importance of this surgery in my treatment plan, I know it has to happen. Since the Chemo didn't kill my tumor, this surgery is even more crucial than ever. But it's still hard, emotionally.

I'm anxious because it's a major surgery and things can go wrong. I'm scared I'll still have cancer when they get the pathology report back. So basically, I'm scared to have the surgery, but I'm scared I'll die if I don't. You know, the normal things to be anxious about.

But lets get down to it...

Boobs. They're just boobs, right? I mean, I don't need them. I was never particularly attached to them, probably because I developed them right when I was expecting them and never had to want for them. They aren't huge but they aren't small, so they weren't something I ever spent any time focusing on. I had friends that wished for bigger ones. Or smaller ones. I remember Rudy Huxtable ordering magic cream to make her boobs come in, which obviously didn't work. I listened to my friends and I watched the very special tv episodes, but boobs weren't my issue. I was always much more concerned with how fat I was. My boobs were just boobs. BUT THEY WERE BOOBS, if I had no boobs it would've been a different story altogether.

But now, those boobs are infected, diseased and they're trying to kill me, so why am I so emotional about losing them?

I suppose a lot of it is the fact that at this point, nearly 8 months since my diagnosis, I'm feeling pretty low, self confidence wise. It feels a little like with each new phase of treatment a little piece of my femininity is taken away...

First, I lost the hair on my head. Being a bald woman has been difficult. I've yet to work up the courage to go commando (no head covering) in public.

Then I lost my eyelashes and my skin turned so dry it flakes off. So I can't even put makeup on to try and look better.

A month into chemo, my periods stopped. That was a temporary benefit, I thought. Then my Oncologist told me the next step was a monthly shot, Zoladex, to shut down ovary function, forever, so that I'd be forced into menopause.

And now, they're amputating my breasts. I know I'll get reconstructed boobies, but with months of fills (with the temporary expanders to stretch the skin) and possible radiation looming, it will be a long time before I have anything near normal looking boobies.

I know, I know. Who cares what they look like, I'll be alive. I know! Stop lecturing me.

So that's where I'm at. I'm thankful I have this way to prolong my life, but I'm scared to have it done. I'm super pissed my boobs betrayed me, but I'm still sad to see them go.